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GRG
New Member


Date Joined Jul 2010
Total Posts : 2
   Posted 8/13/2010 5:50 PM (GMT -6)   

I have enjoyed  and appreciated readingall of your stories. My husband is 68 years old, had TURP in 1994.

Saw urologist once a year. PSA 3.5, Gleason score 3+3.He choose Da Vinchi surgery, had it 05.28.10. After surgery Gleason was 3+4, stage T3a. Several cancer cells were discovered outside prostate. Doctor said, that incontinence should be temporary, 3-4 weeks. However, now my husband has total incontinence. He has office job, computer, 8 hours daily. But he makes Kegel & walking 2 miles a day. He gets up to urinate urine 5-6 tines at night. But he does not feel urges, just some uncomfortable feeling. He is dry when seating. But at walk, he is leaking. This is not gettig better.

We are very depressed, our life completely devastated.

Does anybody have such bad experience?

What may you suggest?

 

Luba


tatt2man
Veteran Member


Date Joined Jan 2010
Total Posts : 2845
   Posted 8/13/2010 6:10 PM (GMT -6)   
LUBA -
you can check the other postings dealing with incontinence here at HW. There have been topics covering Advance Sling and other procedures to help out heavy leakers.

Is he seeing a GP or an urologist on a regular basis after the DaVinci? He/she should be made aware of the stress that he is feeling. It is only about 11 weeks since surgery - and it does take time for the nerve endings to regrow and help gain control again.

At week 15 after surgery, I was finally able to stand up from a chair/ car seat without peeing 4 oz into the guard... and also, have a sense of urges and control... it does take time ... Prior to that I was using 3-4 pads a day often having to change underwear 2 times a day depending on my activity and seating...

Keep up with the kegels and walking - hopefully you can join him , and have it as a positive action.
Stay in touch.
hugs
BRONSON
.................
Age: 54 - gay - with common-law spouse of 13 years, Steve - 60
PSA: 04/2007- 1.68 - 08/2009 - 3.46 - 10/2009 - 3.86
Confirmation of Prostate Cancer: October 16, 2009 - 6 of 12 cancerous samples , Gleason 7 (4+3)
Doctor: Dr. Mohamed Elharram -Urologist / Surgeon - Peterborough Regional Health Centre
Radical Prostatectomy Operation: November 18, 2009 , home - November 21, 2009
Post Surgery Biopsy: pT3a- gleason 7 - extraprostatic extension - perineural invasion - prostate weight - 34.1gm -
ED Prescription: Jan 8/2010 - started daily 5mg cialis - girth back to normal -but not much length - June/2010 -have trimix - tried it twice - Aug 2010 -just lacking motivation right now
Incontinence: Feb 2010- 3-5 pads/1-2 clothes changes/day- March 3, 2010 - week 14 after surgery -finally seeing improvement - March 29- incontinence better - 1-2 pads a day - one pad at night - May 25 - 1 pad during day - 1 pad at night for security (barely needed at all) - stress incontinence at work - lifting trees and shrubs - August 2010 - still at one pad for day and one for night - primarily for hygiene and security - still having good and bad days due to stress and what I have consumed.
location: Peteborough, Ontario, Canada
Post Surgery-PSA: - April 8, 2010 - 0.05 - I am in the ZERO CLUB - hooorah!
Next PSA - October 8, 2010 - TBA -
............

142
Forum Moderator


Date Joined Jan 2010
Total Posts : 7082
   Posted 8/13/2010 9:39 PM (GMT -6)   
Luba,

Like Bronson, I was really wet (7-8 pads a day) for the first 10 weeks or so after DaVinci. It was 6 months before I got down to 1 per day. After that I had IGRT, so everything is distorted now.

It is demoralizing, but walking and doing kegels three times a day (don't bunch it all up in one session) helped me a lot. He should discuss it with the doctor.

Mine got better in bumps went from 7-8 to 4-5 then to 3 then down to 1, but each change had some good and bad days.

I have the same work issues, but it is just something I have to deal with.

Keep in touch. We have been down this road. Welcome to the forum, and fell free to ask questions. We aren't doctors, but we have a bit more experience than any of us would like.

Ed C. (Old67)
Veteran Member


Date Joined Jan 2009
Total Posts : 2461
   Posted 8/13/2010 9:59 PM (GMT -6)   
Luba,
Your husband is only less than 3 months out of surgery. It is not unusual to have incontinence for much longer than that. At over 3 months I was still using 1-2 pads a day. Be patient, it takes some people one year to gain continence.
Age: 67 at Dx on 12/30/08
PSA 9/05 1.15; 8/06 1.45; 12/07 2.41; 8/08 3.9; 11/08 3.5 free PSA 11%
2 cores out of 12 were positive Gleason (4+4) and (4+5)
Negative CT scan and bone scan done on 1/16
Robotic surgery performed 2/9/09 Dr Fagin, Austin TX
Prostate weighed 57 grams size:5.2 x 5.0 x 4.9 cm
Posterior lateral lesions measuring 1.5 x 1.4 x 1.0 cm showing focal capsular penetration over a distance of 3mm in circumference.
Prostatic adenocarciroma accounts for approx. 10-20% of the hemisphere.
Gleason 4+4
both nerve bundles removed,
pT3a Nx Mx, Negative margins
seminal vesicles clean, lymph nodes: not dissected
continent after 5 months
2 months PSA test 4/7/09 result <0.1
5 months PSA test 7/9/09 result <0.1
8 months PSA test 10/9/09 result <0.1
11 months PSA test 1/21/10 result 0.004
14 months PSA test 4/19/10 result 0.005

goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2692
   Posted 8/13/2010 10:07 PM (GMT -6)   
Luba,

I know it is depressing, and certainly an embarassing thing to deal with.

It took me 8 months. I have a very active job, and I chose to use a clamp for those times when I just couldn't leak. The rest of the time I used pads.

Their are other devices out there that he can use as well, like external catheters.

Hopefully, he will get better, at least down to 2 pads a day, that is manageable. Meanwhile, keep up the Kegels, and exercise.

Good luck and welcome to HW.
Goodlife
 
Age 58, PSA 4.47 Biopsy - 2/12 cores , Gleason 4 + 5 = 9
Da Vinci, Cleveland Clinic  4/14/09   Nerves spared, but carved up a little.
0/23 lymph nodes involved  pT3a NO MX
Catheter and 2 stints in ureters for 2 weeks .
Neg Margins, bladder neck negative
Living the Good Life, cancer free  6 week PSA  <.03
3 month PSA <.01 (different lab)
5 month PSA <.03 (undetectable)
6 Month PSA <.01
1 pad a day, no progress on ED.  Trimix injection
No pads, 1/1/10,  9 month PSA < .01
1 year psa (364 days) .01
15 month PSA <.01

Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3741
   Posted 8/14/2010 5:52 AM (GMT -6)   
Luba,
Welcome to Healing well.

In general, 2/3 of men are continent at 3 months after surgery.
Of the remaining 1/3, 2/3 of those will be continent at 1 year. So that means one man in 9 will still be incontinent at 1 year. (That's me)

At 3 months I started making a plot of how much I leak every day. It is important for me to see that there is progress - very sloooowww progress - but still progress.

I am dry when sitting or in bed and in the morning. But as the day wears on, I start to leak when I stand or walk or cough or lift ...or breathe.
I know it is getting better because I have my pee chart. I am down to about 100 ml/ day leak. It gives me hope. That might work for your husband.
Good luck
Jeff
Married 34 years, DX Age 56. First routine PSA test on April 8, 09: 17.8. Start 2 weeks of Cipro to rule out protatitis. May '09 PSA: 22.6, 3 weeks later: PSA: 23.2.
Biopsy 6/10/09: 7/12 scores positive, 20%-70%, Gleason 3+4=7, 3+3=6. Bone and C/T scans neg.
RP DaVinci -7/21/2009 @ Univ of Roch Medical Center
Left nerve gone, right partial spared.
Catheter removed - 7/31/2009 Pathology report received:
Gleason 3+4=7, Tumor size: 2.5 x 1.8 cm, location: both lobes and apex.
Extraprostatic extension present; Perineural invasion: present, extensive.
No Malignancy in Seminal Vesicle, vasa deferentia, lymph nodes 0/13
Prostate mass 56 grams. Pathologic Stage: pT3aN0MX
Post Surgery Status:
Potency - 12/11 5 months, Still no activity, zip. Using pump daily since 11/11. No effect with 20 mg of Cialis or 100 mg of Viagra. Shots next See Uro 1/22/10 Trimix #1. Try 0.08- 25%, 0.12-25%, 2/26/10 try 0.16 First Success! 90%. 8/9/10 Now at 0.24 still 90%
Incontinence - 8/20 4 full pads per day
.. 9/7 3-4 full pads per day. Try controlling fluids.
12/11/09 5 months: 3 pads per day, 400-450ml/day
02/26/10 7 months: 3 pads but leak is now 320 ml (5 day avg.)
03/22/10 8 months: 3 pads per day, 280 ml/day (5 day avg.) PT says all muscles are tight and working properly. "There must be another issue."
5/22/10 10 months: 2 pads per day, 190 ml/day Scope on June 15 "Short sphincter"
7/15/2010 one year: 2 pads per day. 140 ml/day, dry in bed.
Post Surgery PSA - 9/3 6 weeks - 0.05; 10/13 3 months - 0.04
1/14 6 months - 0.05 (Siemens Centaur)
4/14 9 months - 0.04 (Siemens Centaur) and <0.01 (Roche ECLIA).
7/12 1 year - 0.03 (Siemens Centaur, direct chemilum); <0.01 (Roche Cobas 601 ECLIA)

pa69
Regular Member


Date Joined Mar 2009
Total Posts : 260
   Posted 8/14/2010 6:13 PM (GMT -6)   
Hi Luba,

After removal of my catheter following surgery I was continent while seated or lying down, but as soon as I stood up I completely lost control. I work in an office environment and can stay seated for long periods. The problem I had was the distance from my office to the men's room. I wore the super absorbent pads but sometimes it was overwhelmed when I tried to make it to the men's room.

A post in this forum pointed me to the Afex Incontinence System, a collection bag integrated in underwear. This worked very well for me until I started to gain control. I gradually improved my incontinence and became pad free after about 15 months.

I hope to hear you make to pad free in the near future.

Regards,
Bob
Age 71, First ever PSA 7.8 taken June 2008, Biopsy July 2008, 10 of 12 cores positive, Gleason 3+3=6
da Vinci surgery December 10, 2008, catheter removed December 29 2008
St. Lukes Hospital, Bethlehem, Pa.
Dr. Frank Tamarkin
Prostate weight 73.0 grams, Gleason 3+3=6, stage pT3a
Tumor locations: right anterior apex, right posterior apex to mid
left anterior mid to base, left posterior apex to mid
extensive perineural invasion in right anterior apex, right and left posterior apex to mid
seminal vesicles negative
Seven PSA tests undetectable, latest Aug 2, 2010
Pad free beginning Mar. 18, 2010!

zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 8/14/2010 9:34 PM (GMT -6)   
If his issues do not improve after a number of months then consider the info that I have a post about Rick K. started(today) and it includes AUS by a Michigan surgeon from a PCa meeting.
Artificial Urinary Spincter device, I have some tidbits on that in this post now. (the Rick thread and AUS were combined info and same doctor envolved, Rick does not have an AUS himself, to make that clear.)

www.paactusa.org has a section to access information from their past newsletters, they had one on AUS and on the Slings. You can contact them and get the newsletters sent to you for a donation, which they need to continue in helping PCa.

Google search will get you info too. This is used for guys with moderate to severe incontinence, it does work is the good news.

Post Edited (zufus) : 8/14/2010 8:37:59 PM (GMT-6)


Arch
Regular Member


Date Joined Jun 2010
Total Posts : 192
   Posted 8/15/2010 9:20 PM (GMT -6)   
Luba,
 
I had my surgery May 18 and was 12 pads a day to start, plateaued at 8 pads a day until about 2 weeks ago and then all of a sudden went to 3-5 pads a day. I was getting concerned and frustrated but kept at the kegels and it seems to be paying off. I also leaked constantly when walking, still do but less. I found that drinking 6  cups of water at intervals through the day when I knew I would be sitting for 1-2 hours after consuming also helped. Also swore off the coffee, alcohol and carbonated drinks, all irritants.
 
 I'm hoping to be continent in a couple more months, its just something we have to manage as best we can.
 

Sephie
Veteran Member


Date Joined Jun 2008
Total Posts : 1804
   Posted 8/16/2010 6:32 AM (GMT -6)   
Luba, don't want to add to your worries but my husband's incontinence didn't really start to improve until about 18 months after surgery. He is now 2.5 years post op and the "squirts" (as he calls them) are now very rare. With your husband's surgery only 3 months ago, it's likely that he has a few more months to go before you start to see any major improvements. There is no hard and fast rule when it comes to incontinence but chances are excellent that your husband's condition will get better with time. As uncomfortable and discouraging as the leakage is when walking, please encourage your husband to continue it as it helps to strengthen those muscles controlling the bladder neck (that's the area that was traumatized the most during the RP).

My husband was also staged a T3a...and he's 2.5 years out from surgery and doing great.
Husband diagnosed in 2/2008 at age 57 with stage T1c. Robotic surgery performed 3/2008. Stage upgraded to T3a (solitary focus of extraprostatic extension). Perineural tumor infiltration present. Apex margin, bladder neck and SVs negative. Final Gleason 3+4. PSA: 0.0 til July 2009. August 2009 - 0.1, September 0.3, October back to 0.0, December 0.0, March 2010 0.0. Next PSA in 6 months. Thank you God!

stevmac1
Regular Member


Date Joined May 2010
Total Posts : 129
   Posted 8/16/2010 12:07 PM (GMT -6)   
Please don't become disheartened. At about 4 weeks, I used some psychological tricks on myself. When I got home from work, I removed the pad, forcing myself to hold it. I also slept without one. It really is different for each of us. It'll happen.
steve
50 Yrs. old. DX Feb, 2010 w/6.6 PSA.
Biopsy 04-24-10, Gleason 3+3=6

4 of 5 cores left side inv. 4 of 6 rt side

RRP 06-07-10....

16 days post-op, catheter out.

Gleason upgraded to 3+4

No involvement of lymph nodes & seminal vesicle.
Totally continent @ 8 weeks post-op. (!!!)

JB71
Regular Member


Date Joined Nov 2009
Total Posts : 206
   Posted 8/16/2010 2:15 PM (GMT -6)   
This Thursday will be my second visit with my surgion, to get my latest PSA number. Surgery was done exactly 7 months ago and I'm down to one pad per day, but Thursday, I'm going to celebrate by going to see him,  . . . . . . . wait for it:  . . . . PADLESS !
 
(yes, Debbie's suggestion is to bring spare underwear.)
Age, only 71.
July 2009, PSA 9.1, free ratio 0.16
September GLEASON 4+4=8, T2A
Prostate 44cc.
Calcium: 2.46  (range: 2.20 - 2.65 mmol/L)
25 Hydroxy Vitamin D: 102 (range: sufficiency:
76 - 250 nmol/L)
Bone Scan: Negative
CT Scan scheduled for Dec. 1st. Negative.
Started Casodex 50mg. on Nov. 6, first pill of 30.
Got Lupron 22.5mg ( 90 day ) on  November 19.
No real side effects as of Dec. 15 except dry skin and hair but getting quite 'porky' in the belt area even though now I go to the gym, three times a week. Also I dont have a need to shave anymore so now I can save my 'shaving' allowance and direct it to my stash of Depends !
 
Christmas Day got my first hot flashes. Thanks Santa!
 
Open surgery done on Jan. 20th. by Dr. J. Chin at London's University Hospital.
 
Cath removel scheduled for Feb. 8th. Yes, I know,
that will be 19 days. Dr. is out of country until then.
====================================
Pathology Report:
 
Gleason Score: cannot be determined due to hormone therapy effects. ???????
Extraprostatic Extension:
present, left radial, multifocal
present, left basal, multifocal
Resection Margins:
Apical: involved by invasive carcinoma, multifocal
Bladder Neck: involved by invasive carcinoma, unifocal on left side.Other: non-tumoural prostatic present at resection margin.
Perineural Invasion: present.
Seminal Vesicle Invasion: absent
Lymphovascular Invasion: absent
Lymph Node Status: no malignancy in regional lymph nodes
Additional path. findings:
high grade prostatic intraepithelial neoplasia
 
Pathology Stage: yp T3a NO MX
==================================
Radialogist appointment was on Friday Feb. 26 with Dr. Glenn Bauman in London.
Got another Lupron 90 day shot today and he wants to start IMRT soon. CT Scan plus measure scheduled in about 3 weeks. ( march 15)
 
First PSA test since surgery on March 18th.
with the results of <0.03 !!!
 
Started a Facebook page for bikers with prostate issues at:
 
IMRT to started on May 10. Going to get 33 units.
 
.

fertree
Regular Member


Date Joined Jun 2010
Total Posts : 118
   Posted 8/16/2010 4:13 PM (GMT -6)   
Hi Luba,

A lot of us understand your frustration. I had my surgery May 6th, and saw little improvement for 12 weeks. If I walked 10 steps, I would leak when I stopped. There was NOTHING I could do, no matter how hard I tried, to stop the leak. 8 pads a day, damp at night and up several times during the night. And then, after 3 months, like magic, I improved in one day. I know how hard it is to be patient, but it's way to early to panic. Incontinence issues should be measured in months, not week, for a lot of us.
PSA 2.1 on Avodart
Biopsy: 1 of 12 cores positive >5%, Gleason 8
open RP: 05/10/2010 Dr. Gary Steinhoff, Victoria BC
Pathology: pT2c Gleason 3 (80%) 4(20%)=7, no lymph invasion, no extraprostatic extension, negative margins, tumor 5% of tissue.
Nerve bundles removed (based on original Gleason 8)
Incontenence: 6+pads for 9 weeks, dropped to 3 pads in 1 day.
First PSA >.01
Urethral Stricture requiring additional surgery Aug 20 (darn! If I'd known I was 80% Gleason 3 I could have gone for the robot, saved the nerve bundles and bypassed the stricture issue! In my next life, I'm having that biopsy sample checked twice!)

tallguy
Regular Member


Date Joined Oct 2009
Total Posts : 419
   Posted 8/17/2010 8:03 AM (GMT -6)   
Luba,
I am now 2 years post RP. I was incontinent from the start and after trying everything I got no improvement. I am one of those small percentage people that did not improve. Had a sling implanted and now an AUS ( AMS 800 artificial sphincter) that will be activated next week.

I am also an office worker and all through this it never interferred with my work. I have used a combination of pads and clamps (Cunningham Clamp and Dribblestop Clamp). My co workers and friends would never suspect I have a leaking issue but I do not try to keep it secret. Still played golf. I learned to manage leaking completely during the day with little control other than when sitting or laying down. Led normal life for two years.

The good news is that your husband will most likely improve if you follow the advice of all those who have posted. Moreover, even if he is unlucky like me his quality of life will be fine. The eventual fix may be a sling or artificial sphincter and those solutions work fine and you/he will find that they are good solutions.

My email address is in my profile if you click on my name on the left you can find it. I would be happy to exchange emails and if you or your husband would like to visit by phone I will give you my phone number. I have talked to several members I met on this forum and found those conversations to be extremely helpful.

If you click on the two links below you can follow my two year journey that is about to end next week with the AUS:

http://www.healingwell.com/community/default.aspx?f=35&m=1847812

http://www.healingwell.com/community/default.aspx?f=35&m=1710681
64 year old male in excellent physical condition.

PSA jumped 3 to 8 in one year

pt2b NO Mx with a Gleason score 3+3=6.

DaVinci RP, 7/23/08. Tumor type: Acinar

size 5.5 cm x 5.7 cm weight: 77 gm.

Incontinence & ED. Dry nights , no control during day.

FUDS and cystourethroscopy testing 10/09.

24 hr pad wt. 219gm. AUA sympton index 13/35=moderate

Virtue sling surgery 2/3/10 NYU med center

Appeared to help but gradually returned to pre surgery condition.

Back to 3-4 pads/day.

Latest PSA 4/1/10 negative.

AMS 800 artificial urinary sphincter implanted 7/8/10 at U of MI.

SubicSquid
Regular Member


Date Joined Oct 2009
Total Posts : 252
   Posted 8/17/2010 12:51 PM (GMT -6)   
I had open surgery in October 2009. I have had ups and downs with incontinece because of scarring and stricture problems. Surgery to open up a stricture finally allowed me to pee again, but caused me to go from 1 pad a day to a couple a day. Last week I had knee surgery and spent a week laying around the house recovering. I decided to not use any pads and see what happened. Except for a few minor dribbles, nothing. Yesterday I became brave and went to work padless. Again, nothing. Of course a beautiful day was ruined after arriving home and fighting off the urge to pee while feeding the dog caused me to have a healthy squirt before reaching the toilet. I have urgency problems as a side effect of radiation. All in all, I think that the sooner you can rid yourself of the pads the better. I realize that for some that willl be impossible, but I think in my case I should have tried earlier. Padless again today and hoping for a "squirt free" day. Squid.
*Age 63, PSA July 2009 .66; Biopsy: 2 of 12 cores positive, Gleason 3 + 5
*open Surgery 10/22/09
*Post Surgery Biopsy Gleason 4 + 3; 2 positive margins
*03/11/10 - Bladder neck surgery for stricture
*PSA - 30 day/.07, 90 day/.15, 180 day/.21
*07/27/10 - IGRT done - 39 zaps, 70 gys
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